The Lyme Disease Association began as Lyme Disease Association of Central Jersey, Inc. (LDACJ) in 1992 and then became Lyme Disease Association of New Jersey, Inc. (LDANJ) in 1993. It was formed by several patients and doctors─ the Fordyce and Drulle Families were particularly instrumental ─who saw the need to organize and fund research and educate people. It had first a regional then state focus.
 
In 1997, Pat Smith became President of LDANJ and it began to have influence far beyond NJ borders.  She saw the increasing need for a national organization. Supported by entreaties from doctors and patients alike, the LDANJ Board of Directors in 2000 changed the name to Lyme Disease Association, Inc. (LDA) and changed the focus to a national one, which had a broader mission expanding research funding (LDA funded research has appeared in 25 scientific journal publications to date) and including patient support, e.g., LymeAid 4 Kids fund. At that time, LDA decided to remain an all volunteer organization without paid employees so that all monies would be dedicated to the mission.  In 2011, 120 individuals volunteered 20,451 hours to assist with LDA programs. Additionally, LDA created a loose umbrella, LDAnet, where other groups could strategize and collaborate with LDA to impact Lyme disease issues nationally.